After sending a few messages over the last week to the force behind the Preemie Growth Project, she called me yesterday and talked to me for an hour. I needed that. She called after reading an article I sent her about how delayed milk can cause dehydration and brain damage for the newborn. I couldn’t finish the article because I felt like throwing up. The first thing out of her mouth was “you could not have prevented this. You are not omnipotent.” And she repeatedly reminded me to not allow the guilt to get me.
She’s right. Of course she is. But I feel like I’m falling apart over here and have no one to hold me up.
My milk didn’t come in until at least day five of Wallace’s life. Maybe it was his ties. Maybe there were other factors like insulin resistance at play. Then, Wallace went for multiple weeks with only what he could get from me. There was definitely a window of opportunity for dehydration, hypoglycemia, and sodium imbalance to affect his brain.
Back a year and a half ago, I was thinking ataxic cerebral palsy. Then I pushed that out of my mind because he was getting the services he needed in Chicago. I did have hope that the trace minerals would help so much that it wouldn’t matter what the cause was. Today, I called to reschedule with the only pediatric neurologist in the county and, amazingly, we will be seen in three weeks.
As much as I don’t want to put my child through an MRI, I think that is what is coming. I will probably start crying if the neurologist refuses to look for a cause like the physiatrist did last week. I am crying now just thinking of being there by myself during Wallace’s MRI.
And yes, there is guilt. It can’t be helped. There is no way I could have known but also, I did know something wasn’t right. I did try to get help and was dismissed. It also could have been a lot worse.
I am utterly exhausted. I hurt all over. I can’t focus on school. I feel like I can’t do this one my own.
But I will.